🟦 🟨 🟩 February 28 of each year is @rarediseaseday. According to @RareDiseases, more than 7,000 rare diseases affect between 25 and 30 million people in the United States.
This means that one out of every ten Americans suffers from a rare disease — and more than half of them are children.
Last night, @DanBensonNJ and I finally had the opportunity to meet Kinsley Geurds and her family in front of the "TRENTON MAKES • THE WORLD TAKES" sign affixed to the Lower Trenton Bridge.
Thanks to the Delaware River Joint Toll Bridge Commission, the "TRENTON MAKES" LED display was illuminated in blue, yellow, and green to give voice to all those who suffer from rare diseases, their families and caretakers, and the barriers to accessing healthcare...
that they so often face, even those with health insurance. Kinsley, who lives with a rare and undiagnosed brain disorder, is well cared for by her whole family, and in particular by her mother, Pat Yuncza Geurds...
...who is regularly hassled by insurance companies that delay and deny life-saving medical treatments, procedures, and drugs that Kinsley needs to stay alive.
Pat's advocacy on behalf of her daughter is the genesis of Assembly Bill 823 — which I sponsor with Assembly Members Joann Downey and Dan Benson — which would mandate healthcare coverage for complex medical needs until age 18.
Pat — on behalf of all that you and your family do every day for Kinsley, I thank you, and I commend you. #ShowYourStripes on #RareDiseaseDay 💙💛💚
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